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Adjuvant chemo

Mike1212
Posts: 8
Joined: Aug 2018

My wife was diagnosed with colon cancer, stage IIA in June. Surgery was successful, and no lymph node involvement or metastatis. CEA 2.4 post op  Her first oncologist appointment was today, he recommends surveillance, but we asked about adjuvant chemo just in case. He said he doesn't recommend it as it would only make a 1 to 2% improvement in her outcome. He said he would start her on Xeloda if she insisted, but we're trying to weigh the benefits against the side effects for such a small % of improvement. Thanks in advance. 

Trubrit's picture
Trubrit
Posts: 4824
Joined: Jan 2013

I am sorry about your wife's diagnosis, but happy that it was caught at an early stage. 

Making a decision to chemo or not to chemo, is very hard. One never wants to play the 'What if' game, later in life.  

Side effects from Xeloda or any cocktail, will effect different people in different way, so it is hard to even tell you thank the ide effects will be good or bad, but we can tell you that there will be side effects. 

I can't even tell you what I might have done, had I been faced with such a decsion.  Its such a hard and personal one. 

If she does go on Xeloda, one suggestion is to get your hands on a a good quality lotion, because the hands and feet are going to need allot attention. 

Others should be along soon, with their ideas. 

I wish you both the best, whatever your decison may be. 

Tru

Mike1212
Posts: 8
Joined: Aug 2018

Thank you Tru. I appreciate any and all information. 

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Annabelle41415
Posts: 6179
Joined: Feb 2009

Welcome to the boards but I'm sorry to hear of your wife's diagnosis.  Get a second opinion.  Stage 2 can be very tricky because even though surgery was successful, there is always a chance of cells getting loose due to surgery.  Don't let your doctor make the decision for you.  It's important to get more facts.  There are a lot of Stage 2 on here that have done what they call "mop up" chemo.  It's a hard decision to make but don't ever have the "should have" moment.  Make sure you get more info before making this crucial decision.  Treatment is hard, but doable.  Wishing your wife much luck and if I'm able to answer any questions, please let me know.

Kim

Mike1212
Posts: 8
Joined: Aug 2018

Thank you.  I appreciate your advice.  the recommendation about a second opinion is one we're going to have to look into .

 

Kazenmax's picture
Kazenmax
Posts: 349
Joined: Feb 2016

I was diagnosed as stage II as well. No lymph node involvement, clean margins. My doctor, my surgeon, my oncologist all said to do the adjuvant chemo. I was on xeloda and oxaliplatin for 6 treatments.

About 24 months after my initial diagnosis, cancer recurred in my left lung. Again clean margins and no lymph node involvement. CEA has always been low. I'm doing more chemo now.

I guess my point is it's a gamble anyway you look at it. However, I would suggest you get a second opinion on any treatment. maybe even a third opinion to help you decide what you want to do.

I had suggested watchful waiting after my first  surgery and could not find a doctor to agree with me. Even though staticially it's about even with doing chemo.

I wish you luck in this adventure. 

k

Mike1212
Posts: 8
Joined: Aug 2018

Thank you K. Our surgeon and oncologist both have the attitude "all is good", but neither my wife and I are quite comfortable with that. Her next CEA and CT scan are scheduled for September 28th,  I think a second opinion is in order. 

Trubrit's picture
Trubrit
Posts: 4824
Joined: Jan 2013

 but neither my wife and I are quite comfortable with that. 

I am a great believer in follwoing your gut/instinct/intuition/sprirt.  

And your wife's family history definitely plays into the decision.  

Tru

 

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Annabelle41415
Posts: 6179
Joined: Feb 2009

"All is good" is not "good enough".  Don't ever feel like you are beholden to them for any decision.  Who is dealing with this day in and day out - NOT them.  They don't see you and your wife daily struggling with anything that you are going through.  If your whole team seems to feel this way it's definitely time for a second opinion and if they get upset - then there is something wrong there as every doctor should welcome a second opinion.  Please keep us informed.

Kim

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airborne72
Posts: 276
Joined: Sep 2012

Mike:

My diagnosis was exactly the same as your wife's - stage IIA with clean margins and no lymph node involvement.  I did the five weeks of chemo (Xeloda) and radiation prior to surgery.  Then I had the resection and was blessed with a temporary ileostomy.  My surgical path report showed me clean of any tumor and my surgeon confirmed that with his eye balls.  However, my oncologist recommended 12 sessions of FOLFOX6 for adjuvant chemo therapy.

I debated the issue and even posted the same question on this forum as you did.  If you have the patience then you can go back to the October 2017 timeframe and search for my post, and all of the responses.

After much deliberation, I decided to do it.  However, I told my oncologist that I would only do 6 sessions instead of 12 (I had read some studies that suggested that there was only a minimal increase in effectiveness after 6 sessions) AND that I reserved the right to stop the treatment if my hands became negatively affected.  I already suffer from Dupytrens Contractures and Raynaud's Phenomenon so I was not going to let anything else impact the use of my hands.

After only 3 sessions of the treatment I stopped.  It was knocking me to the floor.  My weight dropped to 128 and my blood chemistry was unsatisfactory.  While I felt so miserable (substandard quality of life) I analyzed the clinical addition to quantity of life for someone like me.  I was dancing in the 1-2% improvement area so I decided to stop the treatment and take my chances.

I am 67 years of age (was 66 during the treatment).  Where I am in life weighed heavily on my decision.  If I had been younger then I would have probably stayed the course and completed the regimen.

I will have my initial surveillance CT scan next month.  I feel lucky, but if not then it was my decision and that is very important.  Seek input (as you are), get a second opinion, analyze the data and then your wife needs to make the decision.

I wish you luck and encourage you to continue to read the posts on this forum.  There is nothing but experience on this forum.

Jim

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SandiaBuddy
Posts: 878
Joined: Apr 2017

If I were in your shoes I would search this board for posts about side effects of Xeloda/capecitabine.  The side effects run the gamut from minor to life threatening.  With a better sense of the risks, I imagine you can better weigh the benefit of a 1 or 2% gain in disease-free survival.

Mike1212
Posts: 8
Joined: Aug 2018

Thanks to everyone for the wonderful advice, suggestions, and support . My wife contacted MD Anderson today and we have an appointment with them on September 5th .They may not tell us anything we haven't already been told, but the more we've discussed it, we've come to the realization that her surgeon and oncologist are borderline dismissive during our appointments with them . We'll still research and discuss the adjuvant chemo and will make a decision after our second opinion .

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Annabelle41415
Posts: 6179
Joined: Feb 2009

I've heard that is a wonderful hospital and glad that you have taken the option to go that route.  They might also want to do tests which their doctor's might want to evaluate as well.  I'm so glad you are getting a second opinion. Wishing her the best on the 5th.  Glad that your posts on the board have helped you to decide for a second opinion.  Keep asking away as we've got many on this board that can help with your questions.

Kim

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abrub
Posts: 2094
Joined: Mar 2010

I've been thinking hard, actually wrote this a few weeks ago in response to something else in a different forum or group.  These are my thoughts - apply to me, and may not apply to anyone else, but I'm sharing my thought process.  Remember that ultimately, the decision is YOURS. 

We are all partners in our own care, and we each have the ultimate right to say No or to ask more questions. 

It is important to ask yourself before any treatment/procedure if the intended/hoped for benefit is worth the negative aspects of the treatment. Remember that only YOU can decide what has value for your life. It is important that your doctors be clear on the side effects of a treatment, and on the options available. ASK QUESTIONS.

 From my personal experience:

 In 2016, I had a recurrence with a tumor on the vaginal cuff. I knew that to remove it, I would lose an unknown portion of my vagina, and I did. But I also thought to ask my surgeon to bring in a plastic surgeon so that we could address possible reconstruction issues. He was happy to bring in a Plastic Surgeon colleague who discussed what might be possible in terms of reconstruction. And yes, the plastic surgeon actively participated in my surgery.

 

All went well, and ultimately I was left with a functional vagina. However, I was also left with some random cancer cells – he couldn’t get them all, they were scattered through the tissue. My dr wanted me to consult with various radiologists about possible radiation therapy/brachytherapy (internal radiation). One of those drs really wanted to do brachytherapy on me, even though he hadn’t used it for appendix cancer before, in hopes that it might prevent those cells from growing.

 

My surgeon and I discussed the risk/benefits, and together decided against it. The area to be irradiated was very close to my bladder, and could potentially cause permanent bladder problems. In addition, my tumor type is very slow-growing. What wasn’t mentioned (but I later learned) was the high likelihood that the radiation would permanently scar my vagina so that it wouldn’t be functional again. (This was before I knew that my vagina was functional post-op, as this follow-up occurred before we were allowed to resume activity.)

 

All this with questionable benefit, so we opted not to go that route. My cancer did recur – a few months later, but in a new location. The brachytherapy would not have prevented my recurrence. My dr mentioned radiation as an option for the new tumor, but he was concerned at how close this was to my bowel, and a high likelihood of permanent bowel damage. After discussion, we realized that I have a very high quality of life; and we don’t know where the next recurrence will be. Radiation wasn’t worth it. I am now simply on watch and wait. My dr felt certain I wouldn’t want the radiation, but he offered it to me anyway, as it was an option that he needed to offer. He and I are very much on the same page regarding quality of life.  I don’t want to spend my life within 5 minutes of a toilet.

 

None of us will get out of here alive. It is important that WE make our own decisions as to what we are comfortable with. Are we looking for Quality of Life or Length of Life? What is the balance point? What are we comfortable giving up in this quest to outrun cancer?

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

I've followed you closely as you joined the year after me and you always inspired me.  I'm sorry that you have gone through so much.  It is a toss up on follow up treatment.  My radiation to the hip bones because of the rectal cancer left me with replacement of two hips and very little sex drive and almost impossible for a normal position while making love because the vagina closed up upon radiation.  They don't tell you those things.  I'm wishing you the best going forward and hope that recurrence is non-existent.

Kim

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

that I wrote the essay above.  I had to bring up the idea of vaginal reconstruction.  My surgeon was looking at what he had to do to remove the cancer, and wasn't thinking about other needs/desires.  As soon as I mentioned it, he was on board. (He had already brought a urologic surgeon on board, as the tumor surrounded a ureter, and he wanted expert hands dealing with that aspect.)  The brachytherapy specialist just kept emphasizing how tolerable it was, and all the positives, never once mentioning the possibility (read "likelihood") of permanent vaginal scarring.  He mentioned the slight risk of damage to my bladder.

So often, we are caught up in "get this cancer out of me" that we forget to stop and consider what that may cost.  The word "cancer" is so charged that people are blinded by it.  Now, having gone through multiple surgeries, chemos, etc. over 11 years, I can better step back and look at my options.  And I have a doctor who is on board with me; who agrees with my decisions based on quality of life (and knowing how slowly my cancer is growing.)  The brachytherapist was gung-ho, thinking only about what his treatment could possibly do to the cancer, but not thinking about what it would do to the patient.  I now encourage every cancer patient I counsel (and lots of people are turning to me) to consider carefully what they want.  I don't have to agree with their decisions - I know many would have had the various radiation therapies I turned down - anything to get rid of cancer - but I want people to take long enough to breathe and think.

I do have a recurrence, and will find out with my scans next month how much it's grown.  At the current rate and location, I'm okay with doing nothing.

Alice

 

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

What a story and I'm sorry you are going through all of this.  I'm wishing you the best going forward and always look forward to your posts.

Kim

plsletitrain
Posts: 253
Joined: Jul 2017

I heard Stage II is the usually debated area.  If I were Stage II, I would not do chemo for reasons that you may also encounter from other cancer survivors.  BUT there will always be the endless possibility of what ifs so I guess if I had to make this decision as well, I'll choose the one that can give me peace of mind and one that I'm ready for its consequences for.  I am a high risk cancer patient so  not doing chemo was not an option for me but even then I'm putting a limit.  

Mike1212
Posts: 8
Joined: Aug 2018

Hopefully after the second opinion we will have a better idea of the right thing to do and make sure the initial diagnosis was correct. Thank you to everyone for the wealth of information here. My wife and I both work in healthcare, seen it all from the ER to ICU, home health, hospice, and I can honestly say you folks here are an extraordinary group of people. God bless each and every one of you.

Butt's picture
Butt
Posts: 299
Joined: May 2018

it is my understanding that an MD Anderson protocol is to do chemo with stage 2.

Mike1212
Posts: 8
Joined: Aug 2018

Thanks for the heads up Butt. The oncologist she just saw basically said "you don't need it but I'll give it to if you want it". So hopefully a second opinion will be a lot more informative than that .Her pathology report also revealed perineural invasion, his only comment on that was it's nothing he really even considers. 

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

You surely don't need a doctor that doesn't have your back.  You can read my "About Me" page to see what I've been through as I've been here for many years.  It will give you a little history with me as well.  I'm glad your wife is getting a second opinion.

Kim

Butt's picture
Butt
Posts: 299
Joined: May 2018

Take it. You don t want to look back and wonder what if. 

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